WAY overdue update!

I know it has been way too long since I've updated the blog, but I've been a little busy with Miss Priss and Mr. Man (Brady).  Before I get into the update how about a few pictures...

Happy Memorial Day!  I know I look a little scared in this photo, but don't worry I am okay.  Mommy just forgot to turn the flash off on her phone and it was really bright!

My mommy has this really bad habit of taking pictures of me right after I eat.  I keep telling her that I'm really sleepy, but she keeps saying I'm really cute. 

I had my first photo session with Amanda McNeely last week.  That lady is SO talented!  She took so many pictures of me (without the scary flash) and I didn't even cry once.  She wanted to get some pictures of me sleeping, but I was just too awake!  I haven't seen all of the pictures, just the quick previews she sent my mom, but I'm pretty sure my mommy is about to spend all of daddy's money on my portfolio!

YUCK!!!  I had no idea mommy and daddy were kissing!  Bubba obviously saw them and couldn't contain himself.  I sure do love my Bubba...he is a GREAT singer!

Now for the update.

Ashton is doing very well at home.  We are still on the oxygen, but only 1/16 of a liter when sleeping.  I think she is really close to getting rid of it completely and I know she is ready for it to be gone.  She has scratched her little nose more than once trying to get it off her face.  We saw the cardiologist in Lubbock a few weeks ago and had yet another Echo.  No real changes to report.  He didn't weight adjust her Propranolol (heart medicine) and she has been doing fine-so that is good news.  Her heart function isn't perfect, but her heart is functioning well enough that we are still in wait and see mode.  Speaking of weight.  Miss Priss now weighs 8lbs, 2 oz!  She has baby fat and little leg rolls!  She still doesn't cry much and sometimes I have to wake her for feedings, but she is definitely getting more alert and staying awake for longer periods of time.  She has started to fuss when she wants her diaper changed or just wants out of her swing or seat.  We are trying to work with her on more tummy time which she is perfectly fine with skipping completely.  Unfortunately, the back of her head is getting a little bit flat, so she is going to have to start spending more time on her belly.  Probably the biggest news is that we went last week for our second attempt at a hearing screen.  As you may remember, Ashton did not pass her hearing screens in the NICU in Houston.  Well, last Wednesday we tested her again and her left ear PASSED with minimal, IF ANY, hearing loss!  That is such a huge PRAISE!  They were not able to get her right ear drum to move so we will retest her in a month.  It could be fluid in her ear, that her ear canals are still REALLY small and the probe wasn't able to accurately measure, or that the bones were not formed correctly.  We should know more in a month.  We also will be getting her EI assessment this week to see what, if anything, they recommend on the OT/PT front.

We are in the process of attempting to find someone to care for Ashton as I plan to return to work.  Please be in prayer that we will find the right person to care for our sweet girl.  Obviously daycare is not an option and she still can't be around other sweet darlings who may have sniffles or sneezes.  Midland's economy makes it very difficult to find someone qualified that is willing to care for an infant with a few extra needs.  If you know of anyone that may be a fit for this special job, PLEASE email or call me!

Mr. Man is doing great and is an amazing big brother.  If Miss Priss is fussing he will walk over and sing (usually Father Abraham or a mixture of every nursery rhyme he knows) to her.  He is also the best pacifier finder/giver I've ever seen.  He helps me when we go to Lubbock for doctor's appointments and has just been amazing!  For Father's Day weekend, he and Cody went to the deer lease to work and "hunt".  I know some of you are not fond of hunting, so skip the last picture if you don't want to see Mr. Man's first confirmed kill.  He is so proud of himself and had an amazing day with his daddy. 

We love and appreciate you all so very much!  I promise I will try to update more often.  My mom has been coming every other weekend from Houston to help out which has been a life saver.  Speaking of, I better go remind her she can't hold Miss Priss ALL day long today!

Much love,

Brandi

We are TRYING to find a routine

This will be a short post since I'm so tired I can't see straight, but here are the highlights: We made it home around 9:00 Monday night. Ashton did great traveling in her car seat and we didn't have any oxygen equipment issues. Ashton had a hard time eating Monday night mostly because she was exhausted from the traveling. She stayed alert and awake more than ever before and wore herself out. Tuesday was spent unpacking, dealing with the home health nightmare, and trying to get Ashton to wake up and eat. Overall she did much better, but she was only awake every other feed. Today we had our first pediatrician about with Dr. Motheral in Lubbock. She was amazing and obviously had spent time looking at Ashton's history and records. Brady is back home with us and doing okay overall. He is very clingy and "worried baby sister is going to get sick.". I'm trying to spend as much time with him as possible which means I'm with a kiddo pretty much 24 hours a day since I'm sleeping in Ashton's room. That's the highlights. Lots more to add and talk about, but imm too tired and Ashton eats again in 2.5 hours! Brandi

Ashton has been discharged!!!

We are leaving Houston and headed home. I'll update facebook along they way and post a detailed update here when the dust settles. Prayers for safe travel are much appreciated. Cody, Brandi, Brady, & Ashton

We Have A Date!

We got A TON of news today. First, we got the results of Ashton's MRI results today and they were not medically perfect. There is nothing to be done about it right now and just something we will watch and evaluate closely as she grows. No matter what she faces in the future, she has a daddy, mommy, and big brother who think she is perfect! Next, they slightly altered her heart medication dosage to adjust for her weight gain. Finally, they gave us a discharged date!!!! As long as nothing changes, we should be checking out of the NICU Monday, May 14th! The logistics of taking a preemie who needs oxygen home nine hours away isn't an easy task, but it is one we are definitely willing to under take. Thank you so much for your love, prayers, and support and please keep them coming! Brandi

Happy Birthday Big Brother!

Today is big brother's 5th Birthday! We are so sad we aren't there to celebrate with him, but hope to be home really soon. Ashton had her hearing screen today. Unfortuately she didn't pass in either ear. They will retest her before we go and most likely refer us to an ENT/audiology doctor. The transport team of nurses just took her to get her MRI to make sure she doesn't have any other issues that we aren't yet aware of. All preemies here get an MRI before discharge or at 38 weeks. Please pray we get normal MRI results and that Ashton passes her next hearing screen. Even though we have been through so much, I feel like these last couple of days have really tested me. Please pray for peace and comfort for our family as we prepare to come home--hopefully very soon. Love, Brandi

36 Weeks, 1 Day a/k/a 51 Days

So here in the NICU they talk about Ashton's age in weeks gestation.  So even though she is 51 days old, they call her "36 and 1" meaning I should be 36 weeks, 1 day pregnant.  People ask me how old she is and I have to pause because in my sleep deprived state I can't remember which one I'm suppose to tell them!

Ashton has had a bit of an issue the past few days with getting cold.  Our pod has been very cold and since she is still really little with very little body fat it is hard for her to maintain her temperature.  When she is cold she uses too much energy staying warm and loses weight. They have warmed up the pod and kept her really swaddled which has helped her regain the weight she lost.  Ashton is still on the nasal cannula at a REALLY low percentage of oxygen.  We tried removing it and Ashton didn't tolerate it well.  We will try to turn it off again in a few days and see how she does.

Ashton finished three of her four feedings from her bottle today--the fourth they finished feeding through her tube.  She is working really hard at getting to a point where she is finishing all eight of her bottles, but sometimes she is just too sleepy.  After all, her "birth"day wasn't suppose to be here for four more weeks!  The picture below is her "milk coma" face which she makes after finishing her bottle!

The Hand of God

Prior to my current full time day job of NICU mom, I spent my days working as an Assistant United States Attorney.  I am so blessed to work with amazing, talented people who have all been a tremendous support during this time in my family's life.  My boss posted the following on his Facebook last night:

"From an obituary today of Doris Betts, a Southern novelist who wrote with a Christian "overlay", as she put it. She once was asked what made her want to be a writer. "Oh, Bible stories, without question," she replied. "It makes you feel that the ordinary is not ordinary." I love that! So true. The "ordinary" is not ordinary at all, you just have to look, and you can see the hand of God everywhere."

That last sentence really struck a cord with me.  The "ordinary" is not ordinary at all, you just have to look, and you can see the hand of God everywhere.  If you walked by Ashton's crib today and just glanced over you would see a tiny baby that looks little, but "ordinary".  She doesn't have a ton of tubes or wires; she doesn't have lots of machines surrounding her crib; she has a mobile to look at and a crib mirror--all very "ordinary" things.  But if you actually stop and look at her you can see the tiny scars from all of her previous lines; the marks on her little body from the testing in days past; the nasal cannula that still helps her breath.  If you look at my "ordinary" baby girl, you can see that the hand of God has shaped her and brought her through so very much in her short life. 

I have been very reluctant to share photos of Ashton in her early days mostly out of fear that people would react poorly to seeing a very sick baby.  I didn't want people to pity her--I wanted people to have an image of the fighter that Cody and I saw when we looked at her.  But after reading my boss' post last night my first thought was "when I look at Ashton ALL I can see is the hand of God" because I spent SO many days looking at her at her sickest.

These pictures are of Ashton at about four hours old.  She looks so "big" and "purple" because she had over a pound of fluid on her little body.  She has the ventilator tube in her throat and IVs in her legs. Her eyes are swollen shut and, because of the swelling, you can not see her neck.

I know many people do not see these pictures as beautiful, but to us they show the hand of God.  A God that was giving us precious minutes with our daughter.  We certainly hoped and prayed for more, but we were so very thankful that she was doing what some doctors said was impossible--surviving.  Today, Ashton looks pretty "ordinary" (aside from the tape mustache on her face).  The swelling in her face is gone, she is no longer purple, and she doesn't have any IVs.  While some may walk by and see and "ordinary" preemie in our NICU pod, I say "the 'ordinary' is not ordinary at all, you just have to look, and you can see the hand of God.'"

Much love,

Brandi